Wednesday, September 21, 2016

Grasshopper

As happy as I was to reach the point in my treatment where I
could be off antibiotics for two weeks at a time, the addition of Rifabutin to
the mix crushed me. Rifabutin is a bright orange diamond shaped pill most
commonly prescribed to HIV patients, and it leaves you so nauseated that even
water feels iffy going down.

During the first two weeks of this new protocol, I started
losing weight rapidly. I’d already lost a little over fifteen pounds since
starting treatment in January, a lot of it muscle mass, but I seemed to have
leveled out around 125.Now the pounds started
melting away and new bones emerged in my shoulders, my pelvis.

I went to three doctors about my newly enlarged lymph nodes,
until the last one told me they weren’t actually enlarged, I just didn’t have
any fat to cover them anymore. The barista at the café wistfully asked me one
morning what I did to stay in shape. “I try and eat healthy, I run- but I want
to look like you.”

I didn’t know what to say. I’ve never been weaker or in worse
physical shape in my life.“A pulsed
regiment of Cipro, Omnicef, Septra Double Strenght and Rifabutin” would have been an honest response, but a very unhealthy one, perhaps vaguely
illegal. A beautiful young woman with a gorgeous figure longing after the shape
of a girl who has been sick for a year felt like a dismal report on society.

One day I stepped on the scale at a practitioner’s office in
South Carolina and saw the needle fall below 120. I’ve never seen sub 120
numbers since I passed them on my way up. 119, 117- I was now lighter than I
was in middle school. I started to
panic. I pictured myself in an OB office, a doctor informing me that a sudden
drop in weight could be responsible for my inability to have a baby.

My theoretical infertility and the inexistence of this theoretical
baby was constantly looming in the shadows of my mind, the greatest punishment
from a god I thoroughly do not believe in.

There’s something about weight loss, it makes people
suspicious. My mother sounds angry on the phone, so does my sister. David remains tight-lipped, refusing to say anything that might endorse this new shrinking wife. Unless you’re sick from chemo, there seems to be this idea that you
are secretly in on it, quietly crazy about all the pounds flying off. If you really wanted to gain weight, how hard
could it be? Just eat some ice cream.

At first my doctors tell me to supplement my diet with even
more ‘good fats’. That translates to avocado, coconut milk and almond butter.
Unfortunately for me I can’t stomach those things any more, besides it would
take an awful lot of avocados to really pork somebody up.

Anything I ate back in the winter and spring when I was
severely ill and terrified all of the time taste like rancid medicine to me now.
Same with all the powdered maca and random superfoods I ordered off the Internet
and now keep in glass jars on exposed shelving in the kitchen. Those powders
and infusions provided more than just nourishment over the past year. I became
obsessed with them, stirred them into concoctions that I would stage,
photograph and upload to an instagram account I’d created just for them. Their
powdery promises of miracles soothed me to sleep at night. I perused the Moon
Juice website for fun. They became my friends when I was too sick to have real
friends. Now they repulse me, they taste sick and sad.

On the two weeks off from medicine, I pitch my strict diet
right out the window. My doctor looks at my charts and tells me to eat whatever
I can whenever I can. That evening David and I walk to the ice cream store
up the street from us, and I boldly order a kiddie cone. Salted Caramel. I
lick it and then I throw it away. The sweetness burns in my mouth.

In the next few days, however, my body begins to steady
itself. No more HIV meds, no more Cipro, for two whole weeks. One night, out to
dinner with Erich and our friends Cliff and Kate, I order a grasshopper milkshake.
It goes down easy. Thus begins a regiment of daily, light green grasshopper milkshakes.

But 2hat about the inflammation? You might be asking
yourself, clutching your glass vials of camu-camu. The casein! The sugar, for chrissakes! Fuck it. When you
can’t win you may as well enjoy the taste of losing.

I go deliberately off the rails. I seek out desserts around
the city even when I don’t really want them. The only thing I avoid is gluten.
Long-term antibiotics can make you gluten intolerant for the rest of your life,
even if you had no problem with a slice of bread when you were healthy. In ten
days I take down a boatload of sugar. It would have shocked the pants off of my
new community of autoimmune paleo lyme and MSIDS patients. I would have been
kicked out of the club.

One afternoon I take Whitney to a swimming hole up on the
Blue Ridge Parkway. Whitney has been extremely sick for about two weeks, but I
know if we can just get her to the water, the cold shock of it will help
relieve at least a portion of her pain. It works out, we both feel better. In
fact as we are driving home I feel so normal, so vivacious even, that I suddenly
find myself daydreaming about an Oatmeal Porter from Highlands Brewery. Emboldened
by my moment of good health, I blurt out, “Whit, what do you think would happen
if I drank a beer?”

I expect a sinkhole to open up and swallow us down for
voicing something so ludicrous. I expect Whitney to shake her head and tell me
what a grave, grave error it would be. I haven’t tried alcohol for well over a
year. I have the MTHFR gene mutation that makes methylation difficult, meaning I
have problems detoxing even the everyday, unavoidable toxins. I spent the past
ten months in what felt like one long continuous magnesium-salt bath, trying
to rid my body of poisons. Now I wanted to drink a whole bottle of it?

Later that afternoon, I hike up to Haywood Ave and buy
myself a six pack of Oatmeal Porter from the Brew Pump, a gas station/bar
hybrid that’s become the place to be in West Asheville. I half expected the
cashier to stop me – “Woah, not for you!” in the same way that I half expect
god will prevent me from having my baby. “Not
for you!” But she doesn’t even ask for my ID. I walk home with the sixpack
in my hand, cutting through the Tuesday farmers market at the end of my street
and ignoring the woman who normally sells me mason jars full of raw milk. I was
going rogue.

Back home, I open one bottle and drink half of it. I
wouldn’t say nothing happened- I become
immediately intoxicated. While preparing my world-famous paleo pizza, I lose
control of the knife and slice my finger so deeply that it would still be
bleeding the next morning. I felt liberated and terrified. Then I poured a bath
and sat in it, waiting for the world to end, or at least the hangover from
hell. I had consumed half of a bottle a beer.

In the end, Whitney was right. Nothing came of it. I woke up
the next morning and felt fine. Besides my new status as a mega-lightweight and
a scar across my fingertip, it was entirely anticlimactic, which is exactly
what I wanted. I didn’t want another beer, I just wanted to know that I could
pose as a normal, healthy person for a few minutes and get away with it.

In fact, as the days fold forward, I do feel like a normal
and healthy person, if perhaps a rambunctiously hungry one. I put on a few
pounds and float through a string of miraculously easy days. Life seemed to be
marching forward. Then Monday comes around again, with its twice daily handful
of capsules. The nausea returns overnight.

“You would have been fine just losing a little weight,” says
the stern god-doctor in my head. “But the yo-yoing, the up and down, that’s
what’s costing you.”

7 comments:

I was so glad to see another blog post from you was up, but man....what a post. I don't even have words for a quippy little sum up. It's not happy/sad/good/bad...it is what it is and I'm glad you wrote it. Keep writing, Melina.

Sometimes, we do things that are good for our souls, not just our bodies! Obviously, Oatmeal Porter falls into the soul-nourishing category ;) Everything else will catch up and balance out. You are so strong and life is on your side!

Adam lost about 50 pounds when he was at his sickest -- his his ribcage showed, but it was the first time he wasn't "chubby" in his life. Now that he has gained back most of that weight, he's much harder on his body and wishes to be thin again. Ugh, it's a vicious cycle that too many people are familiar with. I try to remind him that he can still WALK and use his HANDS but body image issues are the worst. I'm glad to hear you speaking up about your own weight issues. I know it's hard but try and remind yourself of the positives, like your FINGERS working and your talented writing brain. Much love, Ann.PS- THANK YOU for coming to our wedding!! I know you weren't feeling well but we were happy to see you!

Damn, Melina. Your writing is mesmerizing. I love the great big "fuck you" to nausea and medicines and this awful thing that's had you in its clutches for a year. If I could will you to health, I would. But instead, I'll keep devouring your words and sending good thoughts from Michigan to North Carolina. I so wish I knew you in real life. I think we'd be friends. Is that weird? I just really like you.

I can relate. I went through a similar weight loss while being on high doses of steroid to treat my RA. It was hard to hear people say how good I looked when I felt like I was withering away and miserable. And it baffled my dr. As steroids usually have an opposite effect. Thank you for being vulnerable sharing how you cope with your invisible illness. You are inspiring and educating many!